CancerCompass message board discussion started by zanam on 5/8/2008 http://www.cancercompass.com/message-board/message/all,23868,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/  Ok, I will fill in some blanks about my dad since the 1st go around I was pretty vauge.  My dad  went into the VA only to have an out patient Gallbladder surgery.  Minutes before the operation the surgen came out and asked my mom if while he was "in there" she or my dad would mind if he "looked around" a bit.  He had never met my dad before that day and after looking over his chart the night before thought there had to be more going on with him than his gallbladder.  Lack of appitite, tired, weight loss, irritability...etc.  I didn't even go to the hospital with them initally since he would be in and out of surgery and back home in a few hours.  After about 3 hours of no word from my mom we began to worry. Moments later the phone rang and it was my mom. She said the surgen had just come out and told her to get thier kids there ASAP...he didn't have good news.  At this point I had no idea he had anything going on other than the GB surgery.  When we got to the VA the surgen came out to talk to us.  He said my dad had something horribly wrong with his pancreas and he needed to do a Whipple Surgery ASAP.  If we didn't do it right then he probably would not have a chance of making it off of the table alive.  He also said at this point that had he not came in that day he would have only lived a max. of 20 days.  We went into this whole Whipple thing totally unprepared.  We had no idea of the risks, outcome...nothing. His pancreas was discribed to us as a shriveled up piece of bacon.  He did not have a typical whipple (per the surgen) he removed the whole pancreas, alot of his intestine and of course re-routed everything.  He was in ICU for 8 days before moving to a regular room.  On day 9 they had to re-open him because his lower intestine was leaking.  He then spent the additional 38 days.  During this time he did not have a bowel movement, did not eat any food (liquids only) , he had no physical therapy.  He lost 100 pounds and I would say  ALOT of muscle mass.  He literally went in a vibrant man and came out an old man.  He does take prescribed enzymes(plaretase 8000/pancrelipase USP tablets/lipase 8000 USP units/protease 30,000 units/ amylase 30,000 units: this is all on bottle on the enzyme pill.)...although after reading these posts I'm not sure he is taking enough.  He takes 4 pills 3 times a day 1/2 hour before eating.  He also now takes epoetine injection 10,000 units 2x weekly for anemia, metoprololtartrate 100 mg one tablet 2x a day for heart and blood pressure, terazosin/hcl 10mg 1x day for prostate, nifedipine 90 mg 1x a day for blood pressure, furosemide 40 mg at night and 80 mg tuesday, thursday, saturday and sunday. , levothyroxine .075 mg 1 table 3x a day before meals (thyroid), polysaccharide complex (iron) 150 mg. 2x a day (aniema), B12-1000 mg.shot 1x every 30 days for nutrition. Multi-vitamin senior formula tablet 1x daily.  He takes lantis(glargine) morning and night and novelog(aspart) at lunch for diabetes.  With no pancreas he is known as a "brittle diabetic." He can go from blood sugar readings of 650 to 28 in a matter of hours.  WIth no pancreas controling his blood sugar is almost impossible.  He had seen several nutritonist and they basically throw their hands in the air after a few weeks.  Within the 1st year of the whipple he had a heart attack and had stints put in, (3) I think.  And also had a hernia operation.Due to his diabetes he has congestive heart failure and kidney disease now.  He is supposed to (per nutritionist) eat low carb, low fat, low protien and still consume approx. 3000 calories to gain weight.  FOr a person that can barely eat that is alot of food.  Honestly at this point I just think it is more important to figure out what he CAN eat with out getting sick and perk him up then worry about tweeking it after he has gained some weight and is physically feeling better? I'm not sure but that is what my gutt says.  He is 6'4" and 175-180 now.  He looks like a skeleton. He has shaking in his left hand/arm almost constantly.  He is freezing cold all of the time...he sleeps on the couch with a down comforter, a winter coat and a heating pad, year round almost all day.  He does go to physical theapy m-w-th to ride a stationary bike for 1 hour.  That is pretty much all of his activity at this point.  Since the whipple, food tastes horrible most days.  It seemed like it was getting better and then a few weeks ago it is back, worse than ever.  He says most things taste to salty.  Well, I think that is pretty much it.  I'm sure I forgot something...but I will update any info. I am sending this back to you and I will post it again on the message board. Seems like Charlotte's husband is very similar to my dad.  I am sorry this is so long but I guess it had to be.  Again, I (we) very much apperciate all of you responses and just the fact that you care enough to help.  Already you have offered more help then the medical feild has given us in 6 years!  Bless you.  Zana  zanam Thu, 08 May 2008 00:00:00 GMT Wow.  I am amazed at what you dad has gone through.  Where theWhipple is concerned there is no substitute for having it done bysomeone who does a lot of them, which is probably not the case withyour Dad's doctor.  Can you see if the VA will send him to a specialtydoctor or hospital?   ------------------------- I somewhat understandbrittle diabetes and know it is the worst kind and very difficult tocontrol.   I understand why he has to limit his fats and sugars, butnot why he has to limit his protein?  I can tell you that when I wastrying to stuff calories down my boyfriend and he had no appetite themonth after surgery, I used Unflavored Whey Protein a lot... you canget it at the health food stores...it is designed for body building toput on weight.  I put it in everything...waffles, pancakes (use sugarfree syrup or jam on them for the diabetes), omelettes (cook them withI Can't Believe It's No Butter Spray..tastes great on veggies and eggsbut has no fat), fruit shakes, smoothies to add protein and calories tohis diet.  If things taste salty to him, can you see if he does bettereating things that are supposed to taste salty or perhaps things thatare stronger flavored but tart, like strawberries or blackberries.   Myboyfriend found he liked Chinese lo mein. which he hadn't really eatenbefore.   I make it with frozen stir fry vegetables, chicken andshrimp, and then throw in cooked top ramen noodles and cook it all witholive oil and stir fry sauce.  Olive  oil,  Pam,  or  I Can't BelieveIt's Not Butter Spray is better to cook with. You can get MCT oil fromthe Pharmacy but they have to order it special usually.   My boyfrienddoes really well with Spaghetti (I make it with very lean ground beef,drained and patted with paper towels to get most of the fat off). Getthe leanest ground beef you can buy (I buy 90% lean/or 93% lean if Ican get it) and make him a big hamburger on a bun with mustard andketchup and tomatoes if he likes that kind of stuff, and give it to himwith Baked Potato Chips or you can bake the frozen fries for himinstead of frying them.   If he used to like cokes but cokes don'ttaste good anymore, change him to something he didn't usually drink(like Dr. Pepper or Rootbeer, so that his mind doesn't compare it towhat he thinks it should taste like.   Maybe try homemade fruitmilkshakes, like strawberry shakes, with protein powder added.  I knowhe can't eat much sugar, but those coconut macaroons can be made withSplenda instead and are just as good, and the measurments are the samewith Splenda as for sugar which makes it easy.  In fact most anythingcan be made with Splenda. You can't cook with NutraSweet because thechemical composition changes when heated, but Splenda works great andyou can buy it in a bag that is granulated just like sugar forcooking.  The only thing I would caution you about since this is alsoabout putting some weight on him is try to get him to drink after themeal, otherwise he won't be as hungry.  They used to tell us not tohave Adrian drink water with his meal because it would kill hisappetite.If you can use Excel, I used an Excel Sheet and trackedevery calorie and protein gram and fat that went in him.  It was achore and he is a lousy patient, but I'm pretty persistent. CalorieKing is a great site to look up any foods, even fast food restaurantsto help you count calories and know where you are each day. You don'thave to join to use the search function, but they are very involvedwith diabetes too, so should be lots of good info on there for you. ---http://www.calorieking.com/  ---Well,you'll be sick of me by now and I'm going to bed.   Hoping for help foryou with the new doctor....but I'd go with your gut feeling.  If itisn't working for him, then insist they try something else..or give youanother doctor.  --- Donna Crane --dmcrane@cox.net dmc1944 Fri, 09 May 2008 00:00:00 GMT